Wrong diagnosis?

It has been a long time since I posted and a lot happened. First, we moved to Switzerland, and even it was a smooth move it was some hard work to get our stuff into a house only the half size than what we had before. But we love our new (own!) house very much, the surrounding is so beautiful. The hills named Jura are right in front of our door and just lovely. The main issue is the language Swiss German! Its so hard to understand even it is German, its totally different. But slowly we are getting to know our new country and we loved it from the beginning.

There where some changes with Nicky right after we moved it. He was very badly constipated for over a week. We know he is reacting with constipation to big changes, he always did. This time it was very bad and he was in so much pain. The whole thing lasted till I saw a doctor two weeks ago. I was driven by the idea to finally fix that problem. And not to let any doctor to only look at the autism plate and not going any further. B/c that what was happening the last eight years. I was just to scarred now that the insides from Nicky are totally hurt.
So by accident I found this pediatrician who is also a Professor and had some publications about Celiac disease. And he has his practice just 15 minutes from our house. When I called him he told me that he is booked out completely but he would love to see us the following Saturday morning. He told me right away he can not help us with autism, but with the constipation he can. GREAT! That sounded like my kind of doctor.
The following morning we saw him. And he was so different from all the other doctors we saw (and there are many trust me!). He didn't want to hear Nickys history, he just looked at him, took some measurements. He also consulted another doctor who is a neurologist. Then he sat down with me and told me a plan about the constipation. He also told me that Nicky has the wrong diagnosis but he has to read a bit more. Then he send us home with a 9-day-kit to take care of the constipation.
The cramping where gone within 24 hours, Nicky was happy again and so was the rest of the family.
We just saw the Doctor last week and he read ALL paperwork I brought him over. That a foot high pile of paper. He told me he is pretty sure Nicky has a condition called Rubinstein-Tabi syndrome . He told me its a genetically condition and we can run a test. Unfortunately no health insurance is covering and its about 2700 USD if you still want to run it. I said no thanks to the test, b/c it doesn't make a difference in his therapies and there is no cure.
After so many years how can it be nobody ever looked into this condition and this one doctor just took the time to look at my son and see it?? The autism diagnosis comes with the Rubinstein-Tabi dx, it very often does, so does the constipation part. It all fits. I am glad I found this doctor, he takes his time and he told me right at our first meeting. I like that.
I asked the doc if we should should continue with the gf/cf diet and the vitamins. He said I should skip glutenfree and see if there are any changes.
Since this weekend Nicky is eating his first gluten since 2006. So far he is alright but we know it can change soon and then we know he is better off then with.
I keep you posted, this whole thing is spinning in my head, did we go the wrong path? I don't know, but I know we always tried the best for Nicky and we will continue to do so!
Happy Easter!

Are you really cleaning?

Just a short post about cleaning. When you think you clean and desinfect remember following:

The active ingredient in most antibacterial products TRICLOSAN not only kills bacteria it also has been shown to kill human cells.

Lysol and other products that makes you feel safe about bacteria are really not good, especially not on your kitchen counters, tables and childrens toys.
Also the use of bleach. Already the smell makes me pass out (always a good sign from your body something is not right!). There is no bleach available in europe, b/c of health issues!
Next time try all natural remendies like Vinegar (kills germs, bacteria and is GREAT on mold) and Lemon juice.

Here in europe most people clean now with vinegar. You can find 100s of cleaners just made our of simple soap and vinegar. It also smells great.

Happy spring cleaning.

Update on the teeth grinding and zinc supplementation

This is a short update on the teeth grinding (see the post from last week!):
Since monday morning we supplement with zinc again. I didn't expect to see a change so fast but by yesterday (Tuesday) afternoon i saw much less teeth grinding with Nicky. So i guess it worked, hurray!

Teeth grinding and the Zinc supplementation

For the last week Nicky does this very bad teeth grinding. You know the kind where you get the goose bumps and you just have to cover your ears because he makes this grinding sound. So i wonder where it comes from out of the sudden. I know that something is going on with him when his behavior changes like that. We have tippy toe walking when there is yeast overgrowth. We have magnesium missing when he eats paper and every book. We have eye rolling, itchy skin and hand flapping also for yeast overgrowth. I know my Nicky buddy, after four hears on diets and biomedical treatments I can tell right away. It's like a switch you can turn on and off.

We had to get him off zinc b/c the brand we used (Kirkman, yes the moms with kids on the spectrum all know :)) had too high amounts of antimony in it. Within two days off zinc he started the grinding and i had to wonder if his zinclevels are really so low that he reacts like that.

So I ordered another brand i got recommended by my fantastic Yahoo Group in the UK (thanks ladies), it came in today. I have to wait another two days to find out if the zinc is getting rid of the grinding. Wait b/c on weekends we do heavy metal chelation and you don't give good metals during rounds.

But I just know him, he will be fine by mid of next week.

I will keep you posted! Have a great weekend

Karin

Chin up!

All moms with kids on the spectrum come to the point where they see no light on the end of the tunnel. Hope is gone and you sit in the corner and cry your eyes out. Everything seems so impossible to do. You hope to get your child better all year long and here you are again: The end! And yet - NO!
After all, he is your child, you love him, he is a tough boy and he has his will. It's almost impossible to get through to him, but when you do, you know it was all worth it. The smirkes he gives you instead of saying, "I love you". The face he has when he knows he is in trouble and you can not longer be mad with him and instead you squeeze him tight and pray that some miracle will happen soon.
Days are hard most of the time, it is also hard on your marriage and the siblings too. But you pull it together, b/c you know you get the sunshine days too.

To all moms (and dads too) out there who fight this horror every day, i know how you feel. You do a great job and keep going.
To a miracle year 2010. It's going to be our year and i will fight every minute for it.
Love to you all!

Gesundheit!

I am happy to say that both boys have been healthy so far this winter season. Both in Nickys school and Philips kindergarten half the classes are missing b/c of flu, cold and even some scarlet fever. There are some rules in our house they seem to work :

• Always wash your hands right away when you come home. Wash them as long as you sing the ABC-song.
• If you are in a public area, like airport or train, take some desinfection wipes with you to use after washing your hands
  

• Drink your orange juice in the morning

• Take your gummy-bear vitamins (i don't have to push them to that rule :) )
  

• Eat your vegetables

• Wear a hat if temps drop under 45
  

• If you are cold, take a warm bath right away
  

With the first sign of a cough, sore throath or runny nose i try to get rid of it right away. Here are some first helpers with the sign of a cold:

Runny nose: Inhale steam; even better add a little menthol.
Drink hot elderberry juice for cough and sore throat.
Drink lots of fluids, f.e. teas to losen the mucus.
Take Vitamin C and Zink, even better, eat foods with this vitamins: Citrus fruits, red peppers, Kiwi, Sunflowerbread, Turkey, Cashews, Gouda-Cheese...

Bless You - Gesundheit!

Amazing healing

I have been reading a lot about homöopathic treatment and overall natural healing. I use it more and more with me and my family. Some things work, some not. If it comes to treating a cold, cough, sneezy nose and sore throath most of the treatments help.
For example for Philips cough (and he catches it like that) i use a home remmedy with onions. Just cut it in pieces, put it in a jar. Then 2-3 Tablespoons of honey over the onions, finished. Drink 1-2 teaspoons of the honey, you don't have to eat the onions :)
Actually Philip loves it, and he knows it helps him. It helps very good at night, when the cough sits deep. Try it, it's quickly made and inexpensive. And: No meds where you always feel a little guilty to give it.
I also read about the 27 different tissue salt, invented by Dr. Schüssler. He believed this natural salts are the only things we need . I bought them all (they are very inexpensive) and try them with the whole family. The great thing with this salts like all homöopathic treatments: There are no side effects, the doses are so little.
So i tried them with fever, cough, allergy. Last weekend i got a very bad lumbargo while i tried to lift Nicky in the Radio Flyer for Trick or Treating.
It was so bad i couldn't move at all and my husband had to lift me up from the couch saturday night.
I took three different salts, No. 3, 7 and 9. Every hour for 4 hours. When i got up the next morning from bed i already felt better, so i kept going with the salts and by afternoon i couldn't feel almost any pain any longer. It amazed me.
Usally if you have this kind of pain you get a shot or you take pain killers. I guess i found my remmedy for my back.
Try it, it's worth a shot!